Trans Americans Health Care Access Imperiled : Shots - Health NewsFor trans Americans, the policy landscape has changed under the Trump administration, making it harder to get the cost of treatments such as gender confirmation surgery covered.

Wren Vetens was promised a significant discount on the cost of her gender confirmation surgery if she paid in cash upfront, without using her health insurance. Yet after the surgery, Vetens received an explanation of benefits saying the hospital had billed her insurer nearly $92,000.
Lauren Justice for KHN
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Lauren Justice for KHN

Wren Vetens was promised a significant discount on the cost of her gender confirmation surgery if she paid in cash upfront, without using her health insurance. Yet after the surgery, Vetens received an explanation of benefits saying the hospital had billed her insurer nearly $92,000.

Lauren Justice for KHN

With the country on course to expand the rights of transgender Americans, college student Wren Vetens introduced herself as a woman for the first time in January 2016, at the annual meeting of the American Astronomical Society. After being raised as a boy and grappling with her gender identity for years, she says it felt liberating to be referred to as "she."

Vetens, who is now 24, began taking hormones to develop female characteristics that spring, as the Obama administration unveiled a landmark rule barring most health care providers from discriminating based on gender identity, under peril of losing federal funding.

That summer, as she prepared to start a Ph.D. program in physics at the University of Wisconsin, state officials there voted to allow transgender public employees — including graduate students working as teaching assistants — to obtain coverage for hormone therapies and surgery, in compliance with the Obama administration's anti-discrimination rule.

Vetens eyed the waitlist of a respected surgeon in California, hoping to have her gender confirmation surgery as soon as the summer of 2017.

Then, with the election of President Donald Trump, policy took a U-turn, changing the landscape for trans Americans. A new group of socially conservative government officials peeled back several new protections one by one, with legal challenges and non-enforcement. The Obama administration's rule shielding trans patients from discrimination is expected to be formally eliminated this summer.

"That is a potentially devastating outcome for trans people in particular but for all vulnerable communities," says Jocelyn Samuels, who helped write the rule as director of the Department of Health and Human Services' Office for Civil Rights under President Barack Obama.

Against that new backdrop, Wisconsin officials decided they did not have to offer coverage for transition-related hormones and procedures after all.

In a matter of months, Vetens went from picking a surgery date to worrying she wouldn't be able to afford the surgery. Without the state insurance to cover her operation, she spent months running a financial maze of estimates, invoices, bills and demands for payment from a hospital and an insurer who didn't know how to price or cover a relatively new procedure.

"It feels like every single part of the system had a different nefarious role in this," Vetens says.

Growing up thinking 'something was wrong'

Vetens describes the distress she had felt throughout her life as "philosophical, existential anxiety."

"It was initially the feeling that something was wrong," she says, "the feeling that the world wasn't real or I wasn't real or nothing was real."

Growing up in a suburb of Salt Lake City, Vetens was bright but struggled to focus in school, enduring bullying over her small stature. Sometimes she would lash out, at age 5 punching a classmate in the vagina who said Vetens couldn't play with the girls on the playground because she was a boy.

Like many children, she challenged gender norms, occasionally swapping swimsuits with a female friend, who also had blond hair and blue eyes, as they pretended to be each other. She knew almost nothing about what it meant to be trans, her first exposure coming when a grade-school classmate told her the pop star Michael Jackson was "a gay, transgender pedophile."

In school, she immersed herself in the dueling worlds of science and fantasy, playing Dungeons & Dragons with her friends during lunch and working in the lab of a Nobel Prize-winning geneticist during the summer. Longing to shed the legacy of a father with whom she didn't get along, she changed her surname to Vetens, a derivation of vetenskap, the Swedish word for science.

Vetens was at a gaming conference in 2013 when she first considered she might be transgender. Then 19, she gravitated to panel sessions that focused on being trans in the gaming community. "What does that say about my gender identity?" she wondered.

Dr. Kimberly Moreland (left) helped her daughter shop for an insurance plan that would cover Vetens' gender-confirmation surgery. Yet mother and daughter still found themselves caught between the hospital and the insurer.
Courtesy of Richard Malatesta/Kimberly Moreland
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Courtesy of Richard Malatesta/Kimberly Moreland

Dr. Kimberly Moreland (left) helped her daughter shop for an insurance plan that would cover Vetens' gender-confirmation surgery. Yet mother and daughter still found themselves caught between the hospital and the insurer.

Courtesy of Richard Malatesta/Kimberly Moreland

Overwhelmed, she put the thought out of her mind until National Coming Out Day that fall, when a friend came out as non-binary, a term describing those who do not identify as exclusively male or female. Me, too, Vetens thought. She posted on Facebook, asking to be referred to as "they."

The news came as a shock to Dr. Kimberly Moreland, her mother, who found out about the post from Vetens' sisters. She called Vetens and asked why she hadn't told her before sharing it on Facebook. "Mama, I didn't tell you because I knew you'd be fine with it," Vetens replied. The two had always been close.

Moreland, an OB-GYN, says Vetens — the oldest of her three children — has "enlightened" her in many ways. Still, the adjustment was difficult. More than two years after Vetens came out, they got into a heated discussion over Moreland's occasional references to Vetens as "he." Being misgendered "felt like a punch in the gut," Vetens says.

The conversation turned to surgery when Moreland asked Vetens if it was something she wanted. Though she initially responded "no," she started researching.

"As soon as I saw a picture from a modern procedure, I thought, Oh my God, I'm having this," Vetens says.

Prepping for surgery

Vetens had no trouble getting the therapist's recommendation letter required to start hormone therapy, while at Reed College in Portland, Ore. She wore a dress to her first appointment. The therapist "took a look at me and said 'Cool,'" she recalls.

Transgender individuals have a gender identity or expression that differs from the sex identified at birth. While often used interchangeably, "sex" refers to the physiological and biological traits of being male or female, while "gender" refers to more socially driven traits, such as behaviors and attributes. An individual's sense of their own gender is called gender identity; the way they communicate that to others is called gender expression.

"Gender dysphoria" is the diagnosis for those with "clinically significant distress" due to the difference between their gender and sex, according to the American Psychiatric Association.

Vetens fit the diagnosis, and the timing of her transition meshed with an expansion of societal thinking. In 2013, the year Vetens came out, the APA's Diagnostic and Statistical Manual of Mental Disorders clarified that "gender nonconformity is not in itself a mental disorder." Television shows like "Transparent" and "Orange Is the New Black" portrayed sympathetic trans characters. Former Olympian Bruce Jenner became Caitlyn.

The male-to-female surgery Vetens wanted to have, penile inversion vaginoplasty, is a painstaking procedure using the penile and scrotal tissue to create a vagina.

Dr. Madeline Deutsch, the medical director for transgender care at the University of California-San Francisco, says research shows hormone therapy and surgeries have been effective in improving quality of life, reducing depression and anxiety, and improving overall social functioning — results that are especially notable for a population at a startlingly heightened risk of suicide.

Federal policy upends plans

When Vetens searched for a graduate program in string theory, a subfield of theoretical physics, she insisted on finding a school friendly to transgender students.

Madison seemed a welcoming place, a liberal island in a largely conservative state. The University of Wisconsin's campus there has an active LGBTQ center, and the UW Health System is building a program catering to trans patients.

"I just sort of expected they're going to be reasonable about this," Vetens says, "and I guess I learned a bit of a lesson about naiveté."

Although Wisconsin had specifically excluded coverage for "gender reassignment or sexual transformation" for state employees, its 11-member Group Insurance Board voted unanimously in July 2016 to overturn the prohibition, citing the new federal anti-discrimination rule.

When she arrived on campus that fall, Vetens was told the state health insurance plan would cover her surgery once the new policy took effect on Jan. 1, 2017.

Then came the surprise victory of Trump, who had built a campaign on rejecting Obama's policies and embraced social conservatives like his running mate, Mike Pence. As a congressman and governor, Pence opposed protections for the LGBTQ community, including an Obama administration directive ordering schools to allow trans students to use the bathroom correlating to their gender identity.

With the national momentum shifting, Vetens was home for the holidays when she learned that she'd lost the coverage she'd counted on to pay for her operation: In a meeting almost entirely behind closed doors, the insurance board voted to reverse its earlier decision. The board had caved to pressure from Scott Walker, the state's Republican governor, and his justice department, which had called the anti-discrimination rule "unlawful" before joining other states in a lawsuit against the Obama administration.

The dramatic policy swings, from the unprecedented expansion of trans rights under Obama to the unpredictable reduction of trans rights under Trump, have left many feeling the whiplash.

Two other transgender women employed by the University of Wisconsin and covered by the state health insurance plan have sued the Group Insurance Board, the university's board of regents and others, alleging sex discrimination based on their inability to get coverage for their procedures. The case is scheduled to go to trial in October.

Health care hurdles

Determined to have her long-awaited surgery, Vetens and her mother set out to buy another policy that would cover it.

"What's striking about it is the urgency this family felt about getting this procedure done, even without having some big questions locked down," says Katie Keith, cofounder of Out2Enroll, an organization that helps the LGBTQ community obtain health insurance, adding: "If you don't get it now, how long do you have to wait, and what does that do to your mental state?"

Vetens researched the procedure's price tag, estimating it would cost $19,000 to $25,000. She then secured new insurance that would cover up to $25,000, became a patient of Dr. Katherine Gast, a surgeon newly recruited by the University of Wisconsin Hospital, and scheduled the procedure during her winter break in her second year. Her insurer, Consolidated Health Plans, preapproved her operation.

Then, about two months before her surgery, a hospital billing representative called: They had run the numbers and anticipated billing her insurer about $100,000. Vetens, who makes about $20,000 a year as a teaching assistant, could have been on the hook for as much as $75,000.

The phone call triggered months of turmoil as Vetens and Moreland fought to get the hospital and her insurer to negotiate a better price for a procedure that experts say costs $20,000 to $30,000 without insurance. Both hospital and insurer blamed the wide divergence in estimates on the fact that they had little experience in billing for a penile inversion vaginoplasty and didn't know how much it should cost.

Paul Meyer, the chief operating officer for The Alliance — which negotiates prices with providers for Vetens' insurance plan — says it had never been billed for a penile inversion vaginoplasty, meaning it would not be able to offer patients like Vetens an "off-the-shelf" quote beforehand.

Meyer says there was no negotiated rate for that procedure. Instead, it would be priced based in part on which of about 1,000 general categories it was grouped into — likely a grouping known as "mental health disorder with O.R. procedure," he says. The price would further be determined by expenses like operating room supplies and other factors, such as how many days of hospitalization were required.

At one point, Gast, Vetens' surgeon, called Vetens and asked her to reconsider moving forward before figuring out how to pay for it, a plea Vetens described as "a slap in the face" from a critical ally who had lobbied the hospital and insurer on her behalf. It had been a difficult year, punctuated by the murder of one friend and the suicide of another, Vetens says. She was determined to have the procedure.

In frustration, a week before the scheduled surgery, Vetens and Moreland accepted a hospital offer to forgo using their insurance and pay $20,080 directly upfront as a package deal — even though the insurer says it would not reimburse Vetens for that kind of outlay.

"What's another $20,000 of debt for me being the person that I am?" Vetens says. "If that's the price that I have to pay to be myself, then so be it."

Vetens underwent a penile inversion vaginoplasty on Dec. 27, 2017, and is thrilled with the results. But mother and daughter — a physician and a physicist — remain stunned by the obstacles they faced, and worry about those who do not have the fortitude and resources to fight back.

Moreland penned an appeal to Consolidated Health Plans, writing: "We feel that this discrimination in billing/insurance coverage practices is specifically because [Vetens] is transgender." She pointed out that patients with no insurance would pay the same price they did and accused the insurer of treating Vetens differently than it would treat women seeking common procedures like hysterectomies.

Transgender people experience a lot of inequality in health care, Keith of Out2Enroll says. Preventive care can be hard to get, with trans women struggling to get coverage for routine prostate cancer screenings, for instance. And insurers have commonly used exclusions for transition-related treatments to justify not covering any medical care for trans patients.

Under the Obama-era rule forbidding discrimination based on gender, trans individuals who ran into trouble could file complaints to the Department of Health and Human Services, which could intercede. Now that option is off the table.

"My case is unique in that I have enough privilege to still have a happy ending," Vetens says.

Bram Sable-Smith, of KBIA and Side Effects Public Media, contributed reporting.

Shots is the online channel for health stories from the NPR Science Desk. We report on news that can make a difference for your health and show how policy shapes our health choices. Look to Shots for the latest on research and medical treatments, as well as the business side of health. Your hosts are Scott Hensley and Nancy Shute. You can reach the Shots team via our contact form.